Down Syndrome and the Stories We Tell

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My non-verbal son’s reactions to stories and films tell me he’s competent in ways he can’t yet express — and I can’t yet fully understand.

By David M. Perry

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(Photo: Warner Bros. Pictures)

’Twas the night before the night before Christmas, and Harry Potter was in trouble. Dementors had already knocked out Sirius Black and were closing in on Harry. Suddenly, a bright white shape appeared across the water. A Patronus, shaped like a stag and summoned at just the right moment, had charged to scatter the evil beasts away.

My son, a nine-year-old boy with Down syndrome, sat on the couch and put his favorite stuffed tiger on his lap, then reached his hands up and put his thumbs on either side of his head, extending his fingers, making the sign for “deer.” He never took his eyes off the screen. I took a picture, then quietly left the room, dodging around my daughter sprawled on the floor in her Gryffindor pajamas. Overcome with emotion, I needed to take a minute alone.

Stories matter. I’ve spent my professional life as a historian and journalist teasing out the power and shape of narratives and how they interact with medieval cultures. As a child, nerdy and often abrasive, I lost myself in stories, inventing them in my backyard or with toys, chewing through books like TheChronicles ofNarnia and Tolkien, and eventually finding them on the screen.

Lately, I’ve had the intense joy of reading some of my favorite books to my daughter, a seven-year-old hyper-verbal child. We finished Harry Potter and the Prisoner of Azkaban (the third Harry Potter novel) before we watched the film, then headed on to Narnia followed by Neil Gaiman’s The Graveyard Book. She and I read the Potter books together, night after night, her body filled with tension as she wondered what was going to happen. Once, after I read aloud the passage where Harry casts a patronus and catches the Golden Snitch to win the Quidditch Cup, my daughter let out a long-held breath. She pumped her fist and told me, “that was amazing.”

But what about my son? As I’ve written before, he’s “functionally non-verbal,” which means that he communicates constantly, but we all have a lot of work to do when it comes to understanding. We’ve made incredible strides together (“Team Nico” includes him, his parents, and a wonderful crew of teachers and therapists) over the years, creating all kinds of functional pathways to communication. He speaks in increasingly intelligible sounds, uses an application on a tablet with a vast vocabulary, and does — as his “deer” sign shows — a little sign language. Particularly in predictable contexts of home and school, we’re able to communicate very well.

His interior life, though, has been much harder to access. How much does he understand? We try always to “presume competence.” This phrase, popular in the intellectual and developmental disability community, commands us to engage with disabled individuals under the presumption that they understand, that they are communicating in ways that work for them, that they are competent people. It’s definitely one of my watchwords in terms of my goals as a parent, but it’s often hard to achieve in practice. Sometimes, I really do want to know what he’s thinking.

Stories are one way to access his thoughts. He likes books, I know, especially those about aquatic mammals or Marvel superheroes, and he likes it when I tell him stories. Every night, for years, I’ve ended our day with, “Once upon a time there was a boy named Nico,” and he interrupts me with “the end,” then laughs. Slowly, I’ve expanded the complexity of the stories, weaving long sagas about superheroes, dolphins, monsters, kung-fu warriors, or sea turtles, then always ending with his name to cue his line: “the end.”

And then there’s the cheering. When we saw The Force Awakens, Nico cheered when Rey caught the lightsaber. This isn’t an obvious moment of triumph unless you’ve been following the story (as opposed to when the base blows up), but it is the absolute narrative climax of the film. In Moana, he cheered as the heroine pressed the heart of Tafiti into the chest of Te Ká, the lava monster. He’s been demanding new types of books, reading more words aloud, especially when he reads next to me. And now there’s Harry Potter’s patronus, in sign.

Here’s why all this matters. Presuming competence is a fine concept, but it’s hard to execute in practice. Our society and its people are deeply steeped in ableist concepts relying on assessing skills and deficits, intelligence and abilities, based on highly prejudicial concepts of normal. No matter how enlightened one wants to be, it’s hard to go about presuming competence without evidence. So when my son cheers for Rey, Moana, or Harry, he’s not only showing me that he’s engaging with stories, but also telling me to remember that he’s competent in all kinds of other ways he can’t yet prove.

Sometime last fall, I told my son his usual good-night superhero story, which he capped off with “the end.” Then he grinned, and said, “once time boy. Hero.” Lying on his back, he raised his arms into the sky and made superhero flying sounds (a kind of whooshing sound). “Nico. The end.”

Stories matter. I want my son to drink in the same narratives that have long inspired me, that surrounded my own boyhood. But then I want to help him tell his own stories, find his own voice, and use those as a pathway toward independence. Whenever he tells me, “Once upon a time,” I think we’re a little closer to that goal.

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